Dr. DeMeirleir speaking Jan 28/13

The main thing i can't get my head around is the discussion on autoimmunity. On the one hand he states: (in relation to Gc MAF)

Risks include a shift to autoimmunity and an immune reconstitution reaction known as IRIS although none of his patients have developed autoimmune disease as a result of Gc-MAF

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But on the other hand

Dr. De Meirleir concluded his talk with a detailed slide describing the various pathways that are disrupted in ME and several other autoimmune diseases. He spoke about a continuum of autoimmune diseases including ME, lupus, RA, type 1 diabetes, and remitting MS

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So he seems to be saying that his patients on GcMAF are not showing signs of developing an autoimmune problem, but at the same time that M.E is on a continuum withother autoimmune diseases.

Am i wrong in thinking this doesnt make sense? It is one of the things that has put me off GcMAF - if i have an autoimmune disease theni wouldnt want to take something that could exacerbate this.

KDM's model for it, as I've learned from other presentations and some bits that he has given to me at the consultations, is that there are several predisposing factors that leads to the vulnerability for certain infections. Some are genetic, at my last consultation he talked about a genetically based weakness in the Th1 immunity, which then would lead to greater risk for persistency in infections like EBV, bartonella and borrelia, and a greater risk for the Th1->Th2 shift that usually is a part of ME. But he has also talked a lot about gut dysbiosis as a cause of disruption of the immune system - dysbiosis is almost universally present in ME patients, and he thinks the dysbiosis comes first, causing what he calls a "pre-ME"-state. I think they do some research at his university about the gut flora and it's connection to conditions like ADHD and autism. Due to the immune dysfunctions the body can't get rid of certain infections well enough, and dormant viruses like herpes viruses get reactivated much more often than normal. The infections disrupt the immune system even more (pathogens often have specific mechanisms for doing just that), and at some point the load is so big that there's an ME outbreak. It makes total sense that an infection with something like EBV, bartonella or borrelia could be the tipping point since those are pathogens that are especially cumbersome for the immune system.

I guess we'll have to wait another month for the new info on auto-immunity until the article is published, but I'm also anxious to see this presentation since I think it's been a few years since KDM has summarized his model and his treatment approach in a lecture (AFAIK). My guess is that his treatment approach isn't going to change very much because of this auto-immune mechanism, it's probably still the complex of immune dysfunction (including gut dysbiosis) and persistent infections that needs to be treated to reduce the auto-immune activity. Medicine hasn't come very far on the road to finding ways to stop auto-immunity, maybe approaches like KDM's that focus on the immune dysfunctions that might be what triggers the auto-immunity is a way forward?

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Thank you, Leachim

That gives me some direction to go in my own treatment.

I am seeing a doctor in Western Aus, Perth, who follows KDM's treatment protocols (as far as i can see).

He wants me to get the most of the tests that Snowathlete got in his recent journey to Dr Meirleir in Belgium.
I was baulking at this because it amounts to $1400 worth of tests from Germany and Sydney, but it looks like the only way forward for me.

Leachim, your explanation makes sense to me. The only thing in it that I still haven't sorted out for myself is the whole gut thing. I am one of the few fortunate PWME with no GI problems. My digestive system is probably the only system that doesn't give me trouble. So if I have a gut dysbiosis, it would have to be something that doesn't give noticeable symptoms -- which is possible.
.

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SOC,

I said exactly the same thing. I wasnt aware of any gut problems at all!

After i contracted CFS, among other things, i had two years of misery from overheating and a burning feeling all over my skin and torso. My naturopath told me i had dysbiosis and insisted i take glutamine. Within a week the burning and overheating had subsided considerably, and its rarely a problem now.

I find the harder i work on my gut, with all the tools of diet, supplements, detox, probiotics, the better my general health and energy are. Even though i dont have obvious problems of pain, bloating, diarrhea.

I said exactly the same thing. I wasnt aware of any gut problems at all!

After i contracted CFS, among other things, i had two years of misery from overheating and a burning feeling all over my skin and torso. My naturopath told me i had dysbiosis and insisted i take glutamine. Within a week the burning and overheating had subsided considerably, and its rarely a problem now.

I find the harder i work on my gut, with all the tools of diet, supplements, detox, probiotics, the better my general health and energy are. Even though i dont have obvious problems of pain, bloating, diarrhea.

Whittemore Peterson Institute Hi, Dr. Demeirleir asked us to edit the recording as their are slides and parts of the talk that were recorded that are part of unpublished data for new manuscripts. We hope to have it up after March 1st when one of the papers is published. Thank you for writing. I hope this helps.

When I first got ME I got IBS. Was prescribed a muscle relaxant. Worked. Took maybe ten doses when I got it. Then it stopped. My gut seems fine. Will be interesting to see what my stool test finds, if anything.